Sun 7 Dec 2008
I have Chronic Fatigue and Immune Dysfunction Syndrome. Please hold the applause.
In the summer of 1991, an interloper fooled the bouncers guarding my otherwise -functional immune system, ducked under the velvet ropes and broke into my DNA. The miscreant might have been Lyme, Epstein-Barr, Herpes VI, or any combination of those viruses, in cahoots with some as-yet-unidentified evil-doer. The vandals left me with drastically reduced mental and physical functioning, a state eventually diagnosed as Chronic Fatigue and Immune Dysfunction Syndrome.
I’m a different person than the exuberant young New Yorker I was before, the person who could work out twenty hours a week on top of a demanding job, run around town with my husband and friends and still spend a couple of hours at night writing short stories.
Having CFIDS means that over the years I’ve had to quit or cut down on most of these activities. It also means I’ve grown used to being labeled a hypochondriac, mentally ill, an alcoholic, and a drug addict.
What’s it like? Imagine looking at this page and not being able to read it, to see only bugs jumping around. Or peering into the kitchen cabinet and not recognizing the box of Cheerios —you see the yellow box, but you don’t know what it’s for. Or driving a familiar route and suddenly not knowing where you are or how to use the instruments on the dashboard panel.
But it’s not always this bad, not every day. When people think “disabled” they think of someone flat-out in bed, confined to a wheelchair. Lots of people with this thing spend a good part of their day on the couch. I had to, when I was first sent home from work. I don’t now. After ten years, I know what to eat and not to eat, how to enforce “down time,” that brain work is a morning-only thing, and sometimes must be banned all day. So no reading, writing, better keep away from the check book or there’ll be hell to pay later, be really careful driving — don’t want that premium going up again! Don’t go into any strange stores, it can only end in tears.
How do we treat it? With traditional medicine. And lots of Snake Oil.